Courage is resistance to fear, mastery of fear. Not absence of fear. (Mark Twain)
At the age of twenty-four, kidney disease had forced Richard Herrick from his work with the U.S. Coast Guard and threatened to take his life. The year was 1954. A treatment for his condition did not exist. Nobody could have predicted that for the first time in medical history, Dr. Joseph Murray would successfully transplant a healthy kidney into Mr. Herrick. This surgery provided the patient with eight additional and healthy years of life.
Ancient myths have held the notion that it was possible to replace a diseased organ with a healthy one. In legend, physicians with the ability to transplant organs could satisfy our desires for renewed health, longer life, or even immortality. The first recorded reference to heart transplantation occurs in a story about Pien Ch'iao, a Chinese physician from the second century BC. As a show of his medical prowess, he allegedly exchanged the hearts of two of his patients. Seven hundred years later, a patient complained about his amputated leg to two physicians named Cosmos and Damian. In this account, they successfully transplanted the leg from a dead soldier to their patient. Because of this and other miraculous feats, Cosmos and Damian were declared Christian Saints. In myth as in reality, a new body part is the ideal treatment for a patient and the highest possible achievement of a medical practitioner.
The scientific advances of later centuries have transformed myth into medical reality. Technical developments in surgery and critical care medicine made transplant surgery possible by the mid twentieth century. However, other obstacles had to be overcome for transplantation to be clinically useful. As part of our immune system, we have blood cells that find and destroy any foreign materials that enter our bodies. These cells protect us from invading bacteria and viruses that may cause disease. Although a transplanted organ can be lifesaving, our immune systems recognize this new organ as different from our own, as a threat, and begin to destroy it. Doctors refer to this destruction as organ rejection. Organ rejection has always been a major impediment to the success of organ transplantation. Until very recently, organ rejection greatly limited the clinical usefulness of transplant surgery. For years, it was possible to surgically place an organ into another person, but the recipient's immune system would rapidly render it useless.
Dr. Murray recognized Richard Herrick's situation as a rare opportunity to avoid organ rejection. The patient had an identical twin brother, Ronald, who was willing to donate one of his own two kidneys to his brother. Since their biological makeup was the same, Richard Herrick's immune system wouldn't recognize his brother's kidney as different from his own. No rejection occurred. The success of this surgery proved finally, that transplantation was a potentially viable treatment for life threatening organ disease. Dr. Murray and others believed that the problem of organ rejection could be overcome in some way. Transplantation could then offer additional years of life to countless patients with severe organ disease.
Today, transplant doctors have learned to control organ rejection by using anti-rejection drugs. These drugs block certain activities of the immune system. The transplant recipient must take these drugs from the time of surgery and usually for the remainder of his or her life. Cyclosporine, an anti-rejection drug made from a fungus, has provided the greatest protection against organ rejection so far. This drug became available for clinical use in the early 1980's. More than any other single factor, cyclosporine has allowed doctors to offer organ transplant as a treatment for many patients with serious illness.
Transplantation represents a true revolution in medical care. Far from the experimental procedure that it was in 1954, transplantation is today a real treatment option for many people with severe organ disease. Before the early 1980's, transplantation was available at only a handful of university medical centers. However, during the past decade, the technology and skills required for transplant procedures have spread to large hospitals throughout the world. Kidney was the first, and remains the most common type of solid organ transplant. But, heart, liver, pancreas, and even lung transplants are almost commonplace today. Because of ongoing research, new approaches to transplant arise frequently. These include small bowel transplants, the transplant of several organs simultaneously, transplantation of a piece of an adult organ to a child, and the controversial transplantation of animal organs into humans. As miraculous as these advances appear, the possibilities for future developments seem unimaginable.
Transplantation can offer seriously ill patients a chance for renewed health and life. However, to take advantage of this opportunity, the candidate must enter a fast-paced and highly technical world at the frontier of medical care. The demands made on candidates, recipients and their families can be huge. Illness can drain personal resources and strength. These demands begin even before acceptance to a transplant list. Transplant applicants must contend with complex assessment protocols, uncertainties about surgery, new doctors in a new hospital, the possibility of relocation to a new city, and large expenses. Following surgery, recipients must face a long recovery period, episodes of rejection, reintegration into family and work roles, and lifelong responsibility for complying with drug and dietary recommendations. Learning to live with these demands can mean the difference between a successful and an unsuccessful transplant.
The demands of organ transplant can be very different to the medical and surgical procedures that most of us are familiar with. For example, consider that you go to your doctor with a chest infection. He or she would diagnose your condition, prescribe an antibiotic and hopefully you will recover well within a short time. You are responsible for taking the antibiotic as suggested, but have little else to do. If you go to a surgeon with a hernia, the surgeon will examine you carefully and then arrange for the appropriate surgery. After a short recovery period, you will continue with your business. Again, you have little to do other than cooperate with your surgeon and trust him or her to provide you with good care. Conditions and treatments like these usually disrupt your life very little.
Compared to these minor procedures, transplantation requires a more interactive process. Multiple people and circumstances interact together to determine the health and well being of a transplant patient. Your state of health, support people, transplant personnel and many other factors are all influential to the outcome of transplant. Transplant patients are not passive recipients of health care. They are active and influential participants in much of the process. For example, we now know that lung transplant candidates who take part in an exercise program before surgery are likely to recover more rapidly following transplantation. Transplant recipients and their support people have many responsibilities (e.g., taking immunosuppressant medications on a daily basis, reporting unusual symptoms to the transplant team) that if neglected, can threaten health or life. Your doctors and others hold many expectations of you. Intrusion of these responsibilities upon your lifestyle can be a major source of stress or discontent.
The active role of the transplant patient is most obvious during rehabilitation following surgery. Minor complaints do not require transplant surgery. Typically, the transplant patient has suffered with a major illness that has disrupted his or her life's activities (work, school, and relationships with family and friends, finances). Recovery following transplant does not just mean that you are well enough to leave the hospital. It may also mean that you must adjust to a new lifestyle, retrain for work, take up new interests or revitalize intimate relationships. Recovery in these areas takes a lot more energy and motivation than simply lying down on a table and letting a surgeon give you a new liver. Rehabilitation after transplantation involves more than a recovery from surgery. It also means recovering from the disruptions that illness has brought to your life. Many recipients describe rehabilitation and adaptation following transplantation as a lifelong process.
Surviving Transplantation draws on firsthand patient reports to answer your questions about the personal aspects of organ transplant. What happens? How might I react? How can I best deal with transplantation? The following chapters provide clear explanations for the unfamiliar and potentially bewildering array of events that can confront the transplant patient. We emphasize the personal impact of transplantation and ways of dealing with the challenges that may occur. Better appreciation of the typical personal reactions to transplant can be reassuring for those involved. For example, one applicant for liver transplant that we remember was anxious about the potential surgery. We mentioned that in our experience, it was normal for many people in his situation to be apprehensive or fearful. This observation appeared to surprise him at first. But then he responded with relief. He said I was not sure if other candidates felt the same way. "They all appear so positive," he said. "I felt embarrassed by my worry."
In this book we have assumed that you are an active participant during transplantation. We assume that your actions can influence long term outcome. Ideally, you are best to read this book from front to back. This is because later chapters build upon the topics of earlier chapters. However, you may prefer to read first about a particular topic of interest, or one that pertains to your own situation. The organization of Surviving Transplantation allows you the option of either reviewing the book from cover to cover, or of selecting topics of greatest personal relevance. Each chapter stands on its own. The words transplant applicant, candidate and recipient refer respectively to people applying to a transplant program, those awaiting surgery or those who have already received an organ. Support person refers to anyone providing emotional or practical support for a transplant patient. Support people include family members, friends, volunteer or professional workers.
Chapter two (Living with Illness) introduces a framework for understanding how illness can disrupt your daily life. We enjoy our lives most when we can be productive, have time for leisure, care for ourselves and have the opportunity for meaningful relationships. By searching out our own balance in these activities, we find meaning and satisfaction in life. Illness disrupts the balance you have found for yourself. This is one way in which illness causes distress.
Waiting for or recovering from a transplant may require major lifestyle changes. Leisure activities that you used to enjoy may not always be feasible. Both illness and transplant can alter work and family roles. Inevitably, you must devote increased time and energy to the care of your health. Large shifts in life values, goals and priorities may occur. This can result in a distressing sense of loss of control, dissatisfaction with life, and alienation from others. Patients and their supports may learn that some emotional upset is commonplace before or after transplant. But many do not see clearly how it occurs or how to deal with it. This chapter provides a foundation for understanding how illness and transplant can disrupt the balance in one's life and cause emotional distress. Later chapters add detail to this framework and discuss how to encourage a sense of personal mastery.
Chapter three (Waiting for Transplantation) takes the reader from the time of application to a transplant program to the day of surgery. Chapter four (Recovering from Transplantation) continues from surgery through the extended period of rehabilitation and adaptation. The different stages of transplant each present you with unique challenges. Each of these chapters emphasizes what it is like for a person to progress through the various phases of transplantation. Personal examples are drawn from those who have received different types of organ transplants. These examples illustrate the differences in medical circumstances between the types of transplant, but also emphasize the common personal impact. We will attempt to address, in these two chapters, many common questions and concerns about transplantation.
Chapter five (Understanding Stress) is an introduction to dealing with the personal challenges of organ transplant. Both modern and traditional teachings provide guidelines and techniques for facing the stress that may arise before or after transplant surgery. Lifestyle changes, self-reassurance, relaxation techniques and drawing on your support network are all introduced. Also provided is a rationale for deciding which approaches are best for you. We help you to identify your own style of reacting to stress. You can use this awareness to know when it is most important to look to your well being. In this way, you facilitate a general sense of healing.
Chapter six (Dealing with Stress) encourages your role as an active health care participant. Caring for your own health and well-being can sometimes mean much more than just doing what your doctor or nurse tells you to do. It may mean dealing with problems that can distract you, or working to resolve nervous tension that can drain your energy. We emphasize an approach that does not require a degree in psychology to understand. We also appreciate that you have more to do in a day than learn stress management. The suggestions provided are those that many transplant patients and their supports have found calming and reassuring. You might surprise yourself and learn how some common sense strategies can help you deal with the stress of transplant.
There is no question that stress can worsen high blood pressure and contribute to irregular heartbeats. Rapid pulse, breathing difficulties and changes in blood sugar can also occur in some people under stress. When physical symptoms like these appear, it is easy to mistake them as a worsening of illness. People who have a physical illness and stress simultaneously can require more tests or medications. Research has shown that people with some types of heart disease can decrease their medications after learning to deal more effectively with stress. Similar improvements in severity of illness, quality of life, or both have occurred in many other physical conditions. Chapter six introduces several approaches for dealing with stress.
Chapter seven (Working with Others) addresses the value of supportive relationships, both personal and professional. Research over the past decade has shown the health benefits of social contact and social support. People in close contact with supportive others are less likely to get sick than others who are more isolated. When they get sick, they tend to have a better outcome than those who must face illness alone. Obviously, rules or trends like this are not absolute. Many people with large and supportive families become ill and do poorly. Others who go it alone can live long and healthy lives. But research suggests that those who foster stable and supportive relationships face the best odds when faced with illness.
Dr. James House and his colleagues wrote an important paper on the relationship between social support and health. They reported some striking conclusions. You may have read in magazines that one's personality can sometimes contribute to heart disease. Everybody has heard that smoking can cause lung cancer. But did you know that lack of satisfying social relationships is a health risk of comparable size? This is exactly what Dr. House concluded. Illness and transplantation can strain relationships with family and friends. Our emphasis in this book is to help transplant patients and their support people to work together constructively and to minimize any conflict that may arise.
Although usually well meaning, those who provide support can either be extremely helpful, or contribute to frustration and invalidism. Families commonly ask how they can best help the transplant candidate or recipient. Patients often need help to negotiate with caregivers the type and amount of assistance needed. This chapter illustrates the most frequent conflicts that can arise between transplant patients and their supports. Using guidelines and examples, it encourages mutually satisfying and supportive relationships.
Chapter eight (When to Ask for Help) can help you to recognize those times when you require, and should ask for professional help. Enhanced autonomy and self-help are major emphases of this book. However, if you do not recognize when you need professional assistance, you may become frustrated or demoralized by failure of your efforts. The transplant team will teach you how to detect physical complications (e.g., organ rejection, infection) early, and to report these to your doctor. This enables the team to provide the appropriate treatment.
Unfortunately, some patients try to conceal mental complications (e.g. confusion, clinical depression). This can result in delayed treatment or further complications. For example, few transplant patients expect that they or their support person could ever become depressed. But statistics consistently show that depression is a common complication of medical illness of any kind. Because the symptoms of depression can be subtle and mimic your physical condition, it can be difficult for either you or your doctor to recognize. Depression in candidates or recipients can interfere with people's ability to give their best to rehabilitation programs. Depressed support people are less available to the transplant patients they wish to help. We have seen many depressed patients and support people who are able to work more constructively with the transplant team following treatment for depression.
There are many examples of personal complications that can benefit from professional attention. A condition that is severe enough to require organ transplant can sometimes impair your concentration, memory, or ability to think through complex plans. In particular, about one-third of liver transplant candidates have severe impairment of their mental abilities at the time of transplant. Your doctors will refer to this condition as confusion, delirium or encephalopathy. It occurs, but is less common in kidney, lung and heart transplant candidates. It is important to recognize the clinical effects of stress, depression or delirium at an early stage. Appropriate management can help you to avoid the negative consequences that can occur when these conditions are unrecognized.
Chapter nine (Transplantation and Personal Growth) speaks to those people whose lives have been deeply moved by illness or transplantation. Many daily events that occur with transplant are the very types of events that can stimulate any of us to reflect on the deeper meaning and value of life. These include severe and disabling illness, changes in your body or your lifestyle, and confrontation with mortality. Identification with an anonymous, grieving family that offers an organ to save your life is a meaningful event that can strengthen your sense of relatedness to others. For many, it is impossible to live through these events without questioning one's path in life. We weave together some basics of the major spiritual traditions to provide some guideposts for those who are pushed by circumstances, along a spiritual path.
Physical illness can set up a vicious cycle that affects negatively, both your personal and physical well being. As you feel more unwell, you have less energy available to tend to your well being. As you are less able to tend to your well being, the more unwell you are likely to feel. You hope that your doctors can help to break this cycle by treating your condition. But when this is not immediately possible, attention to your own well being can help counteract the toll that illness takes on you. Our goal is to help you to promote your own health and dignity in the face of the challenges of illness and organ transplantation. You may at times have to cross your fingers and hope for the best for your physical health. Rarely are you forced to do this with your emotional or spiritual well being. There is usually some potential for control.
What are the stages of transplantation that you refer to?